Abstract
Background
Multiple studies have shown that spouses of people with dementia (PwD) are two to six times more likely to develop dementia than the general population. By promoting healthy behaviours and improving modifiable risk factors for dementia, 40% of dementia cases could be prevented or delayed. However, little is known about the health behaviour changes after a spouse becomes a primary caregiver. Therefore, the aim of this study was to explore the universally lived experience of spousal caregiver of PwD, identify the trajectory and key nodes events of health behaviour changes in spouses of PwD following their partner's diagnosis to inform the adoption of health behaviours.
Method
A qualitative descriptive study was conducted. Using maximum variation and purposive sampling, 20 spouses of people with dementia with two or more risk factors were recruited for semi-structured interviews.The interviews were transcribed verbatim and analyzed via thematic analysis.
Results
Two themes were identified, in traditional Chinese culture, in the life course of spouses and people with dementia coping with the challenges of dementia, health behaviour changes occur in two directions: (a) priming-leaping-coping: becoming a "smart" caregiver, (b) struggling-trudging-silence: the process by which the self is "swallowed".
Conclusion
The impact of the disease on the process of health behaviour change in spouses is directional, and future interventions must capture the marker nodes at each stage. Spouses must continually balance multiple identity roles to effectively maintain positive health behaviours.